October 10, 2024
Advance care planning is an essential part of post-acute and long-term care (PALTC). However, conversations with patients and family members about a serious illness, palliative care, and hospice can be stressful, challenging, and awkward. The Serious Illness Messaging Toolkit was created to ease the stress and—more importantly—enable the most productive, empowering conversations.
“This is an important resource that has changed the way I walk into these conversations,” says Leslie Eber, MD, CMD, PALTmed vice president. She notes that it helps guide practitioners through these discussions, what questions to ask, and how to connect positively with people and enable them to share and communicate openly.
The toolkit developers held focus groups and used current research to provide updated information and dispel inaccurate assumptions. It also uses proven communication strategies built around five key principles:
- Talk up the benefits—highlight how individuals will benefit from these services
- Present choices for every step—offering choices will help patients and families plan their actions
- Use positive stories—this allows people to understand what they can and should experience
- Invite dialogue, and not just once—issue an invitation to begin a conversation, and then keep the conversation going as long as necessary
- Invoke a new team—make it clear that you will form a team around the patient and those who matter the most to them and focus on their goals
No matter what principle you’re focusing on, following the guidance in the toolkit will help ensure your messages are straightforward, honest, and relatable.
These conversations, Dr. Eber stresses, shouldn’t involve a set checklist. Instead, they should include proven listening and communication strategies tailored to the individual’s situation. She says, “You may think you know what you are going to say and how the conversation will play out. Then the person goes another way, shuts down, or gets upset or angry. It’s important to have strategies to pivot if the conversation goes in a direction you didn’t anticipate.” She suggests using narrative teaching, offering stories that are relatable and “less scary.” She often shares hospice and palliative care stories to help people understand different experiences and how things have gone with others in their situation.
Words matter, and the toolkit offers some useful phrases that are helpful in serious illness messaging. For instance, “The therapy is only good if it’s good for you.” These can be especially helpful if you feel lost for words or unsure how to communicate your concern for the person. “These can help ease people’s minds and reassure them,” says Dr. Eber. “Of course, it’s important to personalize every message to the individual sitting with you.”
Using the toolkit, practitioners can role-play these conversations. Not only is this a great way to get experience using the resources and information in the toolkit, but it also helps build confidence in their ability to have productive, mutually beneficial conversations. This is important, as these conversations can make practitioners feel vulnerable. “We sometimes worry that if we visit the topic and the conversation doesn’t go well, the patient and family may get upset and lose hope or faith in us and our desire to help them,” says Dr. Eber.
Needless to say, these conversations can’t be forced; and Dr. Eber notes that it is okay to delay these conversations if, for example, the patient and/or family are exhausted after a long day, emotions are high due to family conflicts or other issues, or people are adamant in their refusal to talk: “These conversations are hard, but they’re completely unproductive if we alienate the patient, scare them, or if they refuse to engage. We want to invite them into this process and create a safe space for discussion. If someone wants a family member involved, we should delay the conversation until that person is available.”
Dr. Eber says that this new toolkit makes practitioners feel like “they’re approaching these conversations with some proven techniques and ideas.” She adds, “If we can understand where people are coming from, that makes us much more at ease and enables us to have more effective, productive, mutually respectful and trusting conversations.”